T1D Hacktivism Brief (NOT medical advice):

1. Definitely, most-definitely pre-bolus for breakfast.

2. Definitely, most definitely, pre-bolus for white bread.

3. Try out the expired stuff, unless cloudy (insulin) or generally useless (e.g. Dexcom: Failed Sensor/???/etc.)

4. If you are a woman, you must immediately download the PeriodTracker App and figure out how to “compensate” for like idk the last 10 days of your cycle (case in point: days 21-30 I literally have to bolus like 20-30% more for breakfast and lunch).

5. Keep an old and trusty meter around (in case you ever don’t have insurance [ I don't have insurance ;( ], those test strips will cost waaay less). Mine is the Accuchek Active (and I can find strips on Amazon for like 15 bucks/50 strips [score])

6. Get a dog. Preferably a large one (or three). Like this:

They will DEMAND to be exercised as well as love you unconditionally, therefore improving your mood, along with your BGs :D)

#Dblog week: What brings me up

My family, my friends. My ability to share with them. My ability to share with you.

This wasn't true even two years ago for me. I was lonely in my diabetes life. I allowed myself to feel all those things all by myself and only by myself: the guilt, the fear, the carelessness, the depression, the anxiety, the feeling of wanting to be "normal" and knowing that diabetes won't let me... These are hard feelings to deal with.

I went to therapy - initially not because of diabetes.. In fact, as I progressed through the sessions, I came to realize - what a big role diabetes has played. In everything. In my attitude towards myself and others, in my risk-taking habits, in my sense of who I am. Diagnosed at 18.5 yrs. old, in the midst of what I will now only describe as a "very tough time in my [very young] life", it was a slap in the face and seemed nearly impossible to accept to say the least (I digress, that's a whole another story).

Today, my friend and I met over lunch (and may have smoked some pot ;). We talked about my upcoming dissertation and about my impending new job, we talked about research, and people we knew, we talked about our bosses, and summer plans. Somehow, diabetes came up. Here's where I'm lucky - being a scientist, most of my friends are familiar with diabetes - most basic things anyway. Side story: this particular friend of mine actually has a history of T2D in her family. Her father very sadly passed away in his 50s due to a heart attack, after many years of obesity and T2D.. (My friend herself has lost ~70 lbs. in the last 1.5 yrs due to this fact mainly). I proceeded to talk (ramble?) about the basal-bolus approach (imagine rambles herewith, including an in-depth discourse about the analog vs. human insulins, doses, lows, highs, etc.), concluding with the statement "so that's the current treatment approach ... sounds simple in theory..." I could tell that for someone who did not have diabetes, she understood very well. She sympathized in my struggle and opened up more about her dad..

I joined the DOC about 1.5 yrs. ago.  Feeling less alone, I felt like I could open up to others. I have not been disappointed. Whether it was my friends, my husband, or my family, I have been finding nothing but understanding and support when it comes to my diabetes life. The thing is I never would have known it was possible, that it was out there to that extent, if it wasn't for all your stories, for all your openness.

Today, I share. With you. Or IRL. And I am still amazed at how much it helps.

I love you all.

<3 -MM

#Dblog week: What brings me down

I haven't written in a month and a half, as life has been crazy, mostly in a good way. At the start of April I traveled to San Diego for a few days for a conference and caught up with my mom, which was fun. While there I received unexpected email for a job interview, a refreshing change of events after months of looking. This was for a 2-yr postdoctoral research position at a state university nearby, and I am both shocked and thrilled to report that I landed the job on the spot. This event set off a chain reaction of quickly finishing experiments and throwing together my dissertation. Currently, I am scheduled to defend my Ph.D. in less than two months, and start the new job at the end of July.

Of course, these are not the things that bring me down. These are all great (life-changing?) events, and I am both excited and terrified to tackle the heavy work-load for the next 1.5 months at the end of which will (hopefully, almost most-definitely) be my Ph.D., and a new job awaiting (one that will pay almost twice what I'm used to). What brings me down is the negativity that Diabetes sometimes casts over these exciting events. When I am at the Zoo and feel like total shit because the traveling and greasy food spiked my BG into the 300s. When I see an average on my BG meter that I don't want to admit is true. When I feel like summer-time BBQs and beer drinking should make me feel guilty. When I think about my future with my husband (which I would like to include children, many perhaps) I am excited, but at the same time Diabetes management ("poor" management in particular) casts a fearful shadow over what should only be happy thoughts. It makes me sad that I can't seem to have 100% enjoyment, because Diabetes is almost always (somewhere) on my mind when I think about my future.

At the same time, I have to remind myself that I am more that just a girl with Type 1 Diabetes. I am a daughter, a sister, a wife, a puppy momma, a researcher, a friend. I'm Maria. I am not just a disease, and I will not let this aspect of who I am take over. On the other hand, I cannot ignore it or it will take over. These days I find myself looking for this balance more than ever, and I am sure (especially after reading some other Dblogs from the DOC this week) that I am not alone in this. Thank you all for being there.

<3 MM

Update: the last Endo appointment, life.

After being tortured in my intravenous blood draw a few weeks back, I anxiously anticipated my lab results over the course of a few days (and was delighted to see an email from my practitioner a few days later). However, I was disappointed to see that although my thyroid, lipid panel, and cmp came back normal (and my glucose level was "high" at 103 mg/dL :), there was no mention anywhere of my A1C (although I read the order and there was supposed to be an A1C done.

In the end, they did one (finger-stick A1C) at the office last week. My Endo always does this thing where he comes in a starts chatting and lets you talk, and it's like you have to guess (or ask) what your A1C is. So I was chatting about how much insulin I was injecting and how I thought I had figured out a better I:C ratio for breakfast during and how that changed based on what week I was in my cycle. And about how I decided to stick with a consistent amount of Levemir daily (split) throughout the month. "Well, your efforts are paying off."  "Oh, really? what was my A1C?" (there, cracked and asked). "Ummm, six point.. six point... Ummm.." [searches through computer files].  But I had heard enough.

I am in the sixes, for the first time in years I'm in the sixes again. "What? I don't care even what it is" I blurted out. "I don't care if it's statistically insignificant from seven. I haven't been in the sixes in years."

I should have known when he asked to bring in the two medical students (he doesn't do it if it's not good news). They were 1st and 4th year D.O. students (worlds apart, basically), and we chatted about me finishing up my Ph.D. (this year!) and the long job search (in progress and still ahead). They tried to follow all my logic and chattering about my care, and stared at me as the Endo checked my feet, lungs, my injection sites. "D you have a cold? There is a little rumble. Not pneumonia or anything, nothing serious... Hmm, your Potassium is a little low, make sure you're getting lots of fruits and vegetables. Not worried/concerned by anything else... Your cholesterol levels are extremely good, just pristine..." [wow, thanks]

There, a clean bill of heath. And a sigh of relief.

My A1C was 6.8. When I first started treating, I had plenty of A1Cs in the sixes. But, I never tested, while taking good amount of insulin and just eating whatever I wanted, and I probably had a lot of lows. In fact, it's kind of surprising I didn't have any serious emergencies or hospitalizations occur during that time. However, after I realized that insulin could kill you (something I think my doctors avoided telling me at all costs in fear I wouldn't treat) my A1Cs jumped to the 8s and 7s for several years, despite obsessive/compulsive testing. In the end, I must (at least partially) credit to my ability to wear a CGM at least some of the time, today, largely due to generous donations from DOCcers (who switched to the G4 and had left-over 7+ sensors to spare).

It's spring time in Southern Ohio. In two days, I take off for San Diego, and I am super excited. I will be attending a cancer conference, as well as meeting up with my mom (whom I haven't seen in six months). I'm a little nervous about the earthquakes as I haven't been out west before (hopefully that's just paranoia). I am already planning how I will manage to shove all my diabetes shit into my carry-on. For this trip, I plan to wear really cute clothes and possibly a bathing suit, and although Dexcom old-faithful is on the back of my arm today, we shall part ways for my time in California.

I feel refreshed. I really needed to see a concrete improvement in my D-management, because I have been putting in a lot of effort, and sometimes lots of times, based on my averages and logs, I'm very disappointed. I really needed to see/hear from my doctor that something is getting done right. And now, although I won't lie to you all by saying I didn't give myself a few "sort of fuck-it" days after the appointment, the lowered result makes me want more improvements and makes me actually believe for a second that I might be able to will definitely actually try to do the pregnancy thing down the line. Things in my life are changing rapidly, and heath care is no different - next month I turn 26, and will no longer be on my parents' nice heath insurance. Will cross that bridge when I come to it.

For the time being, I want to live and enjoy the season. And I will keep walking the dragon, as I must.

Peace out.

Today: An (endo bloodwork) experience; may be "black-swan-classified"

"Hold on just a second", she said. "Marc, Marc!". More urgently now, "Marc, get in here NOW and get on a pair of gloves."

(NOT what one wants to hear when having blood drawn.) Shit.

***

So after escaping (read: lying about having a prior appointment to get out of) a particular TA meeting this afternoon, I felt guilted into making up for it (by making it a half-lie) and showing up to get my bloodwork done, as 1) it was requested by my endo and I have an appointment coming up; 2) my doctor's office is literally right next to my place of work; and 3) my insurance expires 5/1, so really I had no excuse.

I was especially happy to get in quickly and waited no longer than 3 minutes before a friendly plump nurse was penetrating my vein with an only-god-knows-what (20-something?) gauge syringe. Chatting about the weather and asking about IV blood drawings effect on BG levels, I knew something was up when she was not replying to my question.

"Is something wrong?", I finally inquired, as it seemed a very long time to fill up that first (of 3?) tubes of blood, still looking away from "the site". "No", she said, nervously, "just don't move your arm please". SHIT.

Fast forward what seemed like an eternity (probably 3 minutes), as Marc comes rushes in to help her wipe down [presumably the blood from] my arm (which's now numb from the turnicate with my palm sweating like crazy), hands her more tubes, bandaids my arm (finally).

"Am I done?" I asked, finally, feeling the turnicate release my arm, which no longer felt like it was attached to me... "Yes, go right ahead, I just have to make sure and clean this floor thoroghly..." Me: 'What now?" (as I get up) "OH JESUS" (not something I usually exclaim, anywhere really)...

As I stood up with my freshly cotton-balled and bandaided arm, I turned to see what was a splatter (no, more like a POOL) of my own blood. ON THE FLOOR.

Here's where it got really interesting. I had to lay down. I thought I was going to pass the fuck out right there like a deer in the (fluorescent) lights. "Please lay down" I was instructed. I obliged. As soon as I did, I felt the blood rush to my head. I sat up. OK, Maria. Check your BG and get the fuck out already. 

Marc handed me my BG case (I realize now that he took the liberty of taking it out of my purse). 125. dexcom: 99. OK. (I all but ignore Marc's inquiries about the CGM and murmur something about test strip samples, because "my insurance runs out on May 1st." Then I tell him that "it's been a rough 24 hrs BG-wise, but I won the last 3 hrs", as he invites himself to scroll through my Dexcom history.

Once I realize that my dizzy-spell occurred as a result of being tortured by (perhaps a less-than-proficient nurse?) the procedure, and not a result of a low BG, I  quickly collect my things and get out. I feel stupid for having to lay down, especially because I am a cancer biologist (researcher), and have seen and conducted so many dissections, as well as handled (still warm) blood samples of all sorts.I remember handling it rather well when on a lab rotation a few years back I witnessed a mouse being anesthesized, bled from the eye, and then dissected for each organ (with it's heart still beating to preserve the tissue) - all in the name of research of course. I felt nauseated the first time, but nothing like today. I guess something about the sight of your own pool of blood on the floor (especially under fluorescent lights) makes me feel panicked and helpless.

Perhaps it is more the "black-swanness" of it all. In (probably) over 20 times of having my blood drawn IV, I have never bled out all over myself, the nurses, the floor. It's just one of those unexpected things that makes you stop and say, "Wow, THAT JUST HAPPENED."

*Turns out the tube connected to the needle just "slipped off" and my blood collected on the floor for some time before the nurse pinched it off and got help.....

<3
-MM

What he thinks about my T1D...

I've often wondered, "what does my husband feel/think about my T1 diabetes?"

Here's the thing: When I was dx'd and started treating , I said to him (my husband/then boyfriend....and to myself), "Don't [you dare] treat me any different. I just need to inject insulin now to cover the food I eat..." Period...

And that's exactly what he did. Nothing different. More recently (~1 year ago), it all started to spill out of me: how hard diabetes and insulin management really is, how much of a mess I am when I'm low/high, etc. And the whole Glucagon conversation. And then there was Dexcom. All of the sudden (although it was "no big deal") I elected to stick myself with a needle/plastic device, one that would stay attached to my arm/stomach for a week (or longer).

And he reacted accordingly. Accordingly to how someone would act when they LOVE someone. He listened to me. He asked a few questions.

The other night Dexcom woke me up (mildly low according to Dex, low-normal according to meter), I had 3 sips of juice [~3-3:30 AM]. As I got back into bed, he (heavy-ass sleeper, of which I'm jealous) was awake. He spooned/squeezed me, and said "Are you OK?" "I'm OK" I replied.  And then I knew. Knew once again that the boy I married was "the one". Amazing man that he is. As amazing as when I'm low during daytime, and I'm crying and over-treating, and he says "Hey, wait. Wait for the juice to kick in. 15-15 rule, remember?"

Also, here's this: I always was afraid (being a bit insecure) that the Dexcom (or another medical device) would somehow ruin my (wonderful) sex appeal. Boy, was I wrong. The Dexcom experience has made me feel ever-so-confident to get an insulin pump.

I love you BM.

Truly Yours,

-MM

what might have been...what might (still) be...

Being human (and diabetic), I tend to often question "what might have been". Sometimes I question what I would have become if I didn't get type 1 diabetes at the age of 18. What would have been if I got it as a child? What would have been if I didn't start treating it when I did? Would my blood sugar have hit 300 and stayed there for hours this morning if I wasn't drinking beers last night, then overcompensating for a BG of 74 with juice and caramel-chocolate candies before bed?

These days, instead of asking those questions, I tend to ask myself  "what will become of me if I..." Of course, most of these questions/fears concern my future as a PWD. I am only 25. I have had this disease for about 7 (almost 8) years, of which the first year I refused to treat. Did I fuck up my life by doing that? Or is it more like: I have only had this disease for 7 years, and although my A1C isn't great, I am working hard, and I know that I can improve it. But what about NOW? Will I be saying this in 10 years "My A1C isn't great but I'm working on it." Is it/will it be enough? Enough to shelter me from complications, or at least from the fear of utterly hating myself if I get complications from diabetes.

These things are always in the back of my mind, but when I'm talking to others (like my mother, husband, or friends), I'm all positive, like: "The treatment options are so great today, my CGM is so helpful, I am lucky to be able to have the items I need to live (AND LIVE WELL) with this condition..." Inside, it's a constant psychological balance of "what if, what then?" and an even more presise physiological balance of "how much and when?". And more importantly, when will it "all work out", while you slowly come to realize that the answer to that is "NEVER", although there are those fleeting moments of beautiful numbers (and the feelings that accompany them) that seemingly were achieved with no hard work at all and with grace at that. And then, there are moments when I don't question anything, I take my insulin, I eat my lunch, and I don't wonder at all, because I don't really care. Because whether my BG is 250 or 85 I will have to go to work, write my dissertation, take care of my pets, my students, dinner, and my sanity. Sometimes, there are more important things that blood sugar values and IOB calculations. Sometimes, I'm going to hike/drink alcohol/dance/have sex/whatever no matter what my BG is because I WANT TO FEEL HUMAN... (unless it's under 60 and then I realize that I live with what appears to be an angry demon and not a friendly dragon at all).

This may seem to be a non-sequitor, but I have a little "PWD in the wild" side-story to tell. Sort of. A few months back at my endo's appointment, as I was sitting in the waiting room, a young woman walked in (probably my age, no older than 30). She smiled briefly, and I smiled back, as we politely and quietly aknowledged each other's presence. I could tell that I knew her from somewhere and just couldn't place her - living in a small ass town tends to have that effect - you constantly meet people you know or sort of know in random places. It finally came to me that she was a full-time employee at the grocery store I frequent. And then I noticed that she was about 5 months pregnant. Assuming she had T1D, my mind wandered to whether or not her employer was accomodating about her checking her blood sugar, etc. as I have seen her so many times, standing behind the register (presumably for hours at a time). Ironically, I saw her again several times in the last two months, and I noticed that she was no longer working the registers, but instead seemed to be doing other stuff in the back, and I wondered if that was a direct result of her pregnancy with T1D. I thought a few times about approaching her, saying something like: "I know this is going to sound strange, but I saw you at the endo's office, and I guess we have something in common, so I wanted to say hi." Probably that would be OK, but you never know how people will react to stuff like that so I didn't make the gesture. Not yet anyway. I saw her again at the store the other day, this time looking a lot huger and puffier, and I said somewhat of a silent prayer (which isn't something I normally do) on behalf of this stranger and her unborn child, who doesn't seem like a stranger at all to me for some reason. And then I said another one, for myself, for my future, for the possibility of children, for my family, and for the ability to not just find calmness in the serenity prayer, but to apply it to my life.